Sunday, July 26, 2015

With autism, progress doesn’t always mean moving forward.
Sometimes setbacks occur that teach us so that we are ready for the stepping
stones that lead us toward our goals. In January, Alex began attending a day
program for adults with disabilities where he has been working one-on-one with
a staff person to learn computer skills. Because he has had behavioral issues
in the past, they requested that Ed stay in case any problems arose. Although
Alex has made significant improvements in his behavior, we understood their
concerns and were willing to do whatever was needed to make sure Alex was
successful. Frankly, we were unsure how he would adapt to the new environment,
but he made us proud by handling himself very well. Once they were confident
that he could behave himself, they decided that Ed could simply drop him off
and pick him up at the program and did not need to stay for the entire session.
Moreover, they increased his sessions from once a week to twice a week. Despite
various situations that in the past would have thrown Alex for a loop, such as
a broken computer printer, a fire drill, changes in the staff who worked with
him, the internet being down, etc., he never seemed to get upset and rolled
with whatever came his way there.

In fact, he seemed to handle situations so well that they
suggested that he stay for lunch after his computer classes so that he could
socialize with the other clients, who are about his age. When this new schedule
began last month, we were again uncertain as to how Alex would adapt, but he
enjoyed being with other people and seemed to be following the rules. All of
the feedback we were given indicated that he was doing very well, and we were
delighted that he had the opportunity to learn computer skills and to interact
with his peers.

While we thought everything was going amazingly well since
we had only heard positive reports, we found out that they were not happy with
him because he had been resetting the microwave oven. Because of his OCD, Alex
needs for the world to be just so, which means that he always closes cabinet
doors and drawers and that he needs for clocks to be accurate. Also, he
believes that if a microwave is stopped midway through the cooking cycle, it
should be cleared back to the original clock setting. Apparently, someone at
the day program was stopping the microwave without clearing the cooking
time, and Alex saw those flashing lights as an invitation for him to fix a
problem. Clearly, he needs to respect other people’s property, but I’m sure he
intended his actions to be helpful: someone forgot to reset the microwave, and
he was happy to remedy the problem so that everyone could see the clock again. Moreover,
we didn’t know he was doing this until they told his behavior therapist when
she checked with them regarding his progress, and she relayed the information
to us. Once we were alerted to the circumstances, we talked to Alex and told
him that he was not to touch their microwave because it was not his. He seemed
to understand, but he probably would need to be reminded since his need for
clock accuracy is so strong.

In addition, we found out that he had been imitating other
people’s voices, something he does when he likes a person. He truly does not
intend to mock the person; in this case, he copies them because he admires
them. Again, we reinforced with him that he cannot imitate people because it’s
rude, and he seemed to understand. We also discovered that he had been invading
other people’s personal space by standing too close to them or by trying to touch
them, which we know he cannot do, especially since he is so big that he can
appear threatening. Once again, we discussed this issue at length with him once
we were aware of the problem, and Alex seemed to take this concern to heart.

A few weeks ago, after six months of good behavior, Alex
became upset and grabbed his staff person, which was unacceptable, and they
called Ed to come and get him immediately. Right away, Alex knew that he had
handled the situation wrong and expressed remorse for his actions. Also, I
discovered that he had thrush, the yeast overgrowth in his mouth that has
plagued him repeatedly for more than three years and causes him to be extremely
irritable, which probably caused him to become agitated. After much
communication between their staff, Alex’s case manager, our behavior
therapist, and us, they finally decided that Alex could continue but with some
restrictions, including having Ed stay part of the time in case Alex had any
issues. Again, we understood their concerns and complied with their requests,
and we emphasized with Alex the need to behave himself.

Since then, he has apparently been following the rules, but
he has also been a bit anxious, seemingly worried that he will make a mistake.
In fact, he asks us after every session if he did anything bad because he truly
wants to do a good job. Last week, the director told Ed that Alex had a bad
morning, but when he asked Alex’s staff member what had happened, she indicated
that he had been clearing the microwave again and dismissed it as rather minor.
As teachers, Ed and I obviously understand the need for students to follow the
rules, but we also value accurate and specific feedback. As parents, we will do
everything in our power to make Alex the best that he can be, but we will also lovingly
help him to do better when he falls short. Alex knows that he can always count
on us, no matter what, and that support gives him the confidence to try again.

While I wish that Alex would always follow the rules and
behave perfectly, realistically I know that he will make mistakes, and we will
help him learn to do better the next time. Just as Alex is learning from these
experiences, I am also learning valuable lessons that I hope will make me
better as a person, parent, and teacher. Because I appreciate that Alex’s
behavior therapist and music therapist always emphasize his strengths, even
when noting his weaknesses, I know how important being positive is when I deal with
my students. Moreover, Alex’s therapists move on after he makes a mistake,
knowing that he will stumble at times, and they don’t dwell on what he did
wrong, but instead praise how he recovered nicely afterward. Finally, the
compassion and understanding that they show Alex and us as his parents, knowing
that we are doing our best under the difficulties autism presents, strengthens
and helps us move forward so that Alex can continue making progress. As the new
school year approaches, I know what kind of teacher I want to be—one who knows
that my students will stumble from time to time, but who is there with a helping
hand to lead them to the next step, patiently encouraging them along the way and praising their efforts so that they want to keep learning and trying. Just
as Alex continues to learn, I realize that I am still learning, too, making
mistakes and making amends, thankful for all the lessons he teaches me along
the way.

“Though they stumble, they will never fall, for the Lord
holds them by the hand.” Psalm 37:24

Sunday, July 19, 2015

Sometimes the signs are so subtle, they would be easy to
miss. Nonetheless, we celebrate every step of progress we see Alex make,
knowing that he is, indeed, getting better. This week some seemingly small
incidents reminded us just how far he has come, especially in learning how to
remain calm in any situation.

On Thursday morning, Alex awakened shaking. Shaking is not
uncommon for Alex and has various triggers. For example, the lithium he takes
to stabilize his mood can cause occasional tremors in his hands. Also, he has
hypothyroidism that makes him more sensitive to being cold, and he sometimes
shakes when he feels cold. In addition, when he’s excited or ecstatic about
something, he will shudder with joy, as though he cannot contain the happiness
inside him. On that morning, however, the shaking was not caused by any of
those reasons. After looking at the expression on his face, I could tell that
he was having a panic attack, and excess adrenaline was causing his entire body
to shake. Often panic attacks will send him into the fight of the “fight or
flight” mode, and we knew we had to approach him gently so that he would not
become aggressive.

As we tried to soothe him, he told us that he was upset
because he had made a mistake. Knowing we shouldn’t push him too hard or argue
with him, we told him we understood, and we respected his decision to stay home
from his computer class. Since he loves going to computer class, we knew he
must have really not felt well in that he was deciding not to go. We asked him
if he wanted us to stay with him until he felt better or if he’d rather be
alone, and he told us he just wanted to be left alone. His ability to make
rational decisions and remain reasonably calm without escalating to yelling,
throwing things, or becoming aggressive demonstrated a significant and welcome
change in his handling of anxiety. After reassuring him that we were there if
he needed us, we honored his request to be left alone. Fortunately, he also
understood my need to check on him regularly and never became upset when I
asked him if he was feeling better.

A little later, I asked him whether or not he felt well
enough to go to music therapy that afternoon. Although he was less anxious, he
was still a bit jittery. However, he decided that he wanted to go to music therapy
and began getting ready to go. I asked him whether he needed a dose or even a
half dose of Valium, which his doctor has prescribed for panic attacks, to make
him feel calmer, but he was confident that he didn’t need the medication to
cope with his anxiety. When we arrived at his music therapist’s office, I told
him that Alex had been anxious that morning but insisted that he wanted to come
to music. His therapist told him that he admired his dedication and reassured
Alex that if he wasn’t feeling well, they could cut the session short so that
he could go home and relax. Sitting in the waiting room, I wondered if Alex
would make it through the entire session, but he did, emerging smiling at the
end. His therapist told me that Alex had done a great job and seemed to be
calm. In fact, I sensed that the session had made him even calmer, perhaps
doing a better job than the medication might have. Clearly, Alex knew what he
needed to make himself feel better, and he was able to communicate those needs
to us instead of resorting to negative behaviors, which is a tremendous
blessing.

Later that evening, we were able to go out to a nice
restaurant as a family to celebrate our wedding anniversary, and Alex showed no
signs of the anxiety that had bothered him in the morning. He thoroughly
enjoyed his dinner, especially since it was his favorite food––shrimp––and
used nice table manners. In addition, he practiced social skills by engaging in
conversation, asking appropriate questions, and never interrupting. Even when
another waitress came over to engage him in conversation (We learned that she
had worked with adults with disabilities.), he answered her questions nicely.
Clearly, all of the skills that Alex's therapists and we have been teaching
him are making an impact.

Yesterday, we again saw how well Alex has learned to cope in
situations that previously might have upset him. We took him to his cousin’s
graduation party, where there were lots of people gathered under a tent in
mid-90 degree heat. My mom noticed that Alex was shaking, but when I asked him
whether he was nervous or excited (knowing that he certainly wasn’t cold), he
shuddered and told me that he was excited, meaning that he was happy to be
there. Even as a storm loomed closer with thunder and lightening, which used to
terrify Alex, he remained calm and pleasant.

With the storm approaching, we decided to take him to a
nearby restaurant for dinner. Just as we walked in the door, rain began pouring
down, and winds began whipping around. Suddenly, the electricity in the
restaurant went out before they could take our order. Even though we were
basically stuck there since we didn’t want to go out in the storm, Alex didn’t
get upset about the power outage or the storm. In fact, he seemed to see the
whole situation as an adventure, commenting, “It’s very rare for the power to
go out. The odds are about one in one hundred.” He maintained that calm,
waiting patiently for the storm to pass and the power to return, and then
happily enjoyed his dinner once the electricity returned and allowed his food
to be prepared. Based on past experiences where changes of plans could send
Alex into a panic, Ed and I kept watching him to make sure he wasn’t getting
agitated, and we were amazed and pleased by how well he handled the situation. Once
again, he showed us how much better he is now.

While many people would take for granted a young adult’s
ability to cope with a panic attack, a strong storm, or a power outage, let
alone to make pleasant conversation, we know how significant these milestones
are for Alex, and we thank God for making him better. Learning to handle social
situations and to deal with anxiety has not come easily for him, yet he has
worked hard so that he can enjoy typical situations, such as going out to a
restaurant, or even how to cope in rare circumstances, such as when the
electricity suddenly goes out. Essentially, he is showing that he can deal with
the storms of life­­––whether internal or external––so that he can enjoy all
that life has to offer.

“Then they cried out to the Lord in their trouble, and He
brought them out of their distress. He stilled the storm to a whisper; the
waves of the sea were hushed. They were glad when it grew calm, and He guided
them to their desired haven.” Psalm 107:28-30

Sunday, July 12, 2015

In last week’s blog entry, I discussed the issue of sound
sensitivity, which is quite common in people with autism, and how listening to
the EASe CD with modulated music helped Alex overcome his difficulty with loud
noises, such as vacuum cleaners and hair dryers. This week, as I was reading
various research articles from The Great Plains Laboratory, Inc. Facebook page,
I ran across two interesting studies related to other types of sensory issues
found in autism. Although Alex’s sensory issues
have primarily focused upon hearing, sight, and touch, apparently many people
with autism also have overly acute senses of smell and taste, as well.

A news report entitled “Study: Kids with autism don’t
react to odors” describes research in which thirty-six children, half of whom
had autism and half who did not, were presented with various smells through an
olfactometer. [To read this article, please click here.] This tool delivered various scents through the nostrils and then
measured how the children responded to those smells by how much they
sniffed. Typical children breathed in longer for pleasant smells, such as
roses, and breathed in a shorter time for unpleasant smells, such as rotten
fish. In contrast, children with autism breathed in the same amount of time, no
matter what scent they smelled.

The study notes that the response from the children with
autism may be linked to a difference in perception of odors, or this may be a
physical issue in that they cannot control their breathing in response to
different stimuli. Either or both of these theories seem reasonable, since
children with autism typically have sensory and motor issues. Whether this
sniff response has possibilities as a diagnostic tool for identifying children
who have autism is uncertain, but researchers noted that the observed responses might explain the
problems many children with autism have with eating, since the sense of smell
is closely linked to the sense of taste. However, as one autism researcher
noted, the problems with eating may also be linked to motor problems in swallowing
and chewing.

Although I’m not completely certain how well Alex can perceive smells, he will comment when he smells something
unpleasant, telling us, “It’s too stinky!” and even leaving the room to avoid
the smell he doesn’t like. Moreover, he will tell us to spray air freshener,
saying, “Need Oust in here!” if the smell is mild. If the smell is too
offensive, he’ll say, “Need to spray Lysol!” Also, he has recently begun to
make comments comparing one smell to another, remarking, “It smells like french
fries in here.” Consequently, he seems to deal with his smell sensitivities
because he can verbalize ways to describe them and or even ways to eliminate
those he finds offensive. Perhaps his control over smells is one of the reasons
he is not a picky eater like many people who have autism.

In another article posted on The Great Plains Laboratories’
Facebook page this week, the Simons Foundation Autism Research Initiative
recently published the summary of a research study entitled “Picky eating sways
parents’ views of children with autism.” [To read this article, please click
here.] This study from Italy found
no differences in behavior or physical issues, such as gastrointestinal
problems, in children with autism who were picky eaters versus those who were
more willing to eat a variety of foods. However, parents of children who were
picky eaters perceived their children to have more behavioral problems and more
stress.

Interestingly, the article notes, “the root cause of picky
eating in autism remains unknown.” However, the article fails to address
sensory issues that likely would impact the child’s eating habits. If the food
smells strange or the texture does not appeal to the child, the child won’t
want to eat it. Moreover, as the autism researcher in the previous article
mentioned, difficulties in chewing and swallowing often found in autism would
certainly play a role in eating problems. While this article focuses upon
parents’ perceptions of picky eaters, underlying issues beyond the behavioral
and physical components they examined are clearly at work.

As I have mentioned in previous blog posts, we are blessed
that Alex has always been a remarkably good eater, willing to try any food.
Moreover, despite the limitations his food sensitivities present that restrict
him to a diet free of glutens and milk products, he eats a wide variety of
foods. For most of his life, the only three foods he would not eat—other than
those not permitted on his gluten-free casein-free diet, which he follows
faithfully––were popcorn, broccoli, and mashed potatoes. In the past few years,
he has even taken two of those foods off his list and now likes broccoli and
mashed potatoes prepared without milk products. We suspect that his former
dislike of those two foods was more from a texture standpoint than a taste and
smell aspect. At this point, the only food he will not eat is popcorn, which he
tells us is “too salty and too crunchy.” Needless to say, we are delighted that
he is such a good eater; in fact, he eats a more varied diet than either of his
parents. He loves seafood, which I despise, and he happily eats peas, carrots,
and mayonnaise, which Ed avoids. Apparently, Alex does not have the smell and
taste sensitivities that many people with autism have, and we are thankful for
that.

While a great deal about autism remains a mystery, sensory
issues, such as sound, smell, and taste sensitivity obviously impact daily life.
If these hyperacute senses create stress, the person may either avoid
uncomfortable situations or may react in ways to cope with
the unpleasant stimuli. Often therapists who work with children who have autism
will note, “Behavior is communication.” Meltdowns may be the only way some children
with autism can communicate how overwhelmed they feel when they are assaulted
with sounds, smells, and tastes that are too strong to handle. As parents, we
need to find ways to help our children cope with the world that is often too
much for them, and hopefully, research will find better methods to allow
children with autism to enjoy the variety of sensory experiences in life so
that they can live life to the fullest extent.

“Taste and see that the Lord is good. Oh, the joys of those
who take refuge in Him!” Psalm 34:8

Sunday, July 5, 2015

Last week with the Fourth of July holiday approaching,
various people asked me if fireworks bother Alex. Because so many people with
autism have sound sensitivities, this was a very reasonable question. In fact,
many children and adults with autism find certain noises quite disturbing and
must cover their ears or wear noise-cancelling headphones in situations where
loud noises are present. Fortunately, fireworks and other annoying sounds do
not upset Alex, and I believe that a home therapy program we did with him when
he was about five years old greatly helped address his sound sensitivity. As I
listened to the teenage boys who live behind us setting off all kinds of
fireworks last week, including throwing M-80 firecrackers in garbage cans that
made our neighborhood sound like a war zone, I was thankful that Alex isn’t
bothered by loud noises any more.

When Alex was little, his sensitivity to sound was one of
our first clues that he had autism. As a baby, he would pick up his head when
our relatively quiet furnace would come on, and he seemed to recognize the
sound of our cars when one of us pulled into the driveway, showing joy that
Mommy or Daddy had come home even before we walked in the door. In contrast,
the sounds of the vacuum cleaner and hair dryer terrified him, sending him
running away and crying. I remember once when he was a toddler that as he and I
sat in the car waiting for Ed to scrape ice off the windshield, he was nearly
hysterical, apparently upset by the scraping noise.

When I mentioned this sound sensitivity to his pediatrician,
who was certain that Alex didn’t have autism and that I was just an overly
concerned mother, he suggested that we take him to an audiologist to have
musician’s earphones specially made for him to cancel out background noise.
Knowing that he would outgrow these custom-made earphones quickly, spending
hundreds of dollars on having them made struck me as a waste of money. Instead,
I began looking into ways to treat his sound sensitivity, not just ways to
block noise, realizing that he would often encounter surprising sounds and may
not be prepared with earplugs, earphones, or headphones at all times.

My research led me to reading about auditory integration
therapy, or AIT, developed by French ear, nose, and throat doctor Guy Berard in
the 1950’s to address hearing sensitivities and imbalanced perception of sounds
in the ears. AIT programs typically require twenty sessions of listening to
specially modulated instrumental music with a variety of sound frequencies.
These twenty sessions typically last thirty minutes each over ten days with two
sessions per day that are at least three hours apart. Generally AIT takes place
over two weeks––five weekdays followed by a weekend off and resumed the
following five weekdays. In addition, AIT requires that the client wear
headphones for the thirty-minute sessions and basically do nothing except
listen to the music.

After reading that some children with autism respond very
well to AIT, I considered whether this therapy might benefit Alex. However, I
had some doubts as to whether this treatment had any merit because its methods
seemed somewhat suspicious to me. Moreover, the cost of the treatment––typically
$1000-$2000––was quite expensive. If AIT worked, it certainly would have been
worth the money, but I was still skeptical. Another concern I had was that
Alex’s sensitivity to touch was even greater than his sensitivity to sound, and
I could not imagine that he would be able to wear headphones for the ten total
hours he would be required to wear them for the AIT sessions.

Consequently, I began seeking alternatives and found the
EASe CD, which was recommended by another autism mom. EASe, which stands for
electronic auditory stimulation effect, was created in 1995 to help address
sensory processing issues in children with autism and others with sensory
difficulties. Essentially, the program works very similarly to AIT in that the
person listens to instrumental music modulated with various sound frequencies
for thirty-minute sessions twice a day for ten days. Unlike AIT, however, the creators
of EASe seemed to understand that some children would not be able to use
headphones and suggested that they could listen to the CD on a stereo with good
speakers instead. In addition, the cost of this in-home program, which offered
great convenience, was only about $60 to purchase the EASe CD that could be
used over and over. After watching Alex cover his ears every time a loud
appliance was turned on, I decided it was time to try the EASe CD and ordered a
copy.

That summer, I faithfully followed the prescribed schedule
of twenty half-hour sessions over ten days, playing the CD that sounded like
pleasant but slightly strange elevator music over our stereo speakers with
Alex, who was remarkably cooperative about listening. I can still picture him at
age five, sitting in our living room, contentedly rocking in our La-Z Boy
rocker recliner as he listened to the EASe CD. While I listened along with him,
I still had my doubts as to the effectiveness of this therapy, but we soon
noticed that he stopped covering his ears when he heard loud noises, and he no
longer became upset by the sounds of noisy electrical devices. Over time, his
sensitivity to sounds seemed to disappear completely, and I credit the EASe CD
with that positive outcome.

Recently, I checked online to see if EASe was still making
CDs and discovered that they have expanded their line to several different
music CDs from the original one we first purchased in the 1990’s, and they also
have also developed games to address sound sensitivity. Moreover, they offer a
free download of their EASe music CD, which seems like a great way for parents
to try the program and see if their children might benefit. In addition, their
website clearly explains how the program works, answers many questions parents
might have, and offers testimonials of customers who have benefited from the program.
[To check out the EASe website, please click here.]

Even eighteen years later, we still see the benefits of the
EASe CD in that Alex handles noise amazingly well, never covering his ears and
never needing to wear headphones in noisy situations. We take Alex to concerts,
sporting events, and even fireworks displays, and he enjoys himself thoroughly,
never bothered by the loud noises that once upset him greatly. With the various
issues autism presents that makes Alex’s life difficult, we are thankful that
we found a therapy that allowed God to heal him so that he could enjoy typical
family outings without being bothered by sounds. Now, that is something
definitely worth celebrating with fireworks!

“But Moses replied, ‘No, it’s not the shout of victory nor
the wailing of defeat. I hear the sound of a celebration.’” Exodus 32:18

About Me

Pam Byrne is the mother of an adult son, Alex, who was diagnosed with autism in 1996, at the age of four. Since then, she has researched autism and pursued various therapies to help him reach his full potential. Along with her husband, Ed, she coordinates Alex's support services, including behavioral, recreational, and music therapies and respite care. A graduate of Valparaiso University, she is a retired middle school English teacher. She lives in Valparaiso, Indiana, with her husband and son.